Home - Claire Moore - Labor Senator for Queensland


Senator MOORE (Queensland) (17:41): One of the more exciting things in the health system over the last 20 years has been the rise of consumer focused health. We have a great deal to be grateful for. There are some active, dedicated and very brave consumers who have consistently put information and personal experience into the public realm to ensure that consumers have a genuine say in the health systems of this country.

I've been fortunate enough over many years now to work with a number of consumer groups. They include the Consumers Health Forum of Australia and the National Mental Health Consumer and Carer Forum. These two groups have lived and breathed the focus of Senator Griff's motion. What they talk and engage with their community about is ensuring there is transparency and accountability in our health system. As Senator Griff said, 'The voices of consumers will be active in policy development and, most particularly, they will be reinforcing the need for consumers to make informed decisions about what treatments, what services, what processes they want to follow for their health.'

It's not been easy to have this voice heard. Consistently, there have been attempts to push back, to ensure that there's not a view that only professionals in some way have the necessary knowledge, the necessary experience and the necessary probity to determine health practices. I suppose it's not that much different from legal services of any other profession. But I really want to acknowledge in this motion, this afternoon, the fact that consumer organisations have been at the forefront in ensuring that we have the development of effective policies. They also have a very strong role in the coordination-bringing around the table-of people with shared experiences and knowledge so that we can talk through issues around health services and ensure that there is a width of knowledge and experience available.

A Four Corners program recently filmed about out-of-pocket expenses in the Australian health system has caused a lot of questions in the wider community. I think this was one basis for Senator Griff's motion. We did a Senate community affairs inquiry a couple of years ago that looked specifically at the issue of out-of-pocket expenses in our health system. Naturally, the consumers were strong advocates and provided very strong evidence to that inquiry.

This particular Senate inquiry is available in Hansard, as are all public hearings and submissions, and made very confronting reading. I think it was two-and-a-half or three years ago. It was particularly confronting for someone like me. I sat through that evidence and looked at what was happening to the concept of informed choice in our medical process. We made recommendations, and promises were given by government about how they would be able to respond to the issues. We saw, only very recently, more up-to-date filming and experiences in hospitals across this country, which put the fact that changes had not been made. The absolutely solid principle in medical practice in Australia of informed consent does not seem to have the solid basis that one would expect across some areas of medical practice.

I want to put a couple of points on record this afternoon. We were deeply concerned during the Senate inquiry that informed consent seemed to have various definitions, depending on where you were and which practitioner you were dealing with. It seemed to me that if there is one thing that should have a fairly clear definition, it should be informed consent. What we also found was that giving someone a piece of paper and thinking that is the beginning and the end of your responsibility in getting them to sign, saying that they understand all that's above, is not the best and most effective mechanism to fulfil the expectation that the patient and their families understand fully what they've signed up for and what they're going to enter into.

That is not just for financial informed consent. One of the focuses of this particular motion is the financial out-of-pocket expenses, the enormous costs and the variation in costs that seems to be available across the system for exactly the same service, depending on where you live, which hospital you attend and which other services you have. It's also about the absolute knowledge of the process that you're going to face-the different things that you're going to experience once you take that very important step into the medical system.

We've heard that a number of people are just not able to understand the complexities and the variations that are before them once they step into sometimes quite confronting medical experiences. That's perfectly understandable, particularly at a time when you're unwell, or in pain or deeply concerned about a family member who has a serious illness or a need for emergency surgery of some type. We talked at length during our inquiry about which wraparound services should be provided in the medical space to ensure that if people don't have that understanding there'd be services around them that would work with them, so that if anything happened they would have timely intervention to ensure that they are supported through the various issues that could happen and could go wrong.

One of the gentlemen we had evidence from in one of our regional centres claimed that the impact on his health caused by the receipt of the medical bills after his surgery possibly had more impact on his health than anything that led up to the original surgery. He was very open about that. He said that the shock that he received when he received the bill for the other services around what he was in hospital for caused him such immediate distress that he genuinely thought that he was going to need more medical treatment. That was not unusual, except that he had a particularly amusing way of putting it into expression when he came to our inquiry.

The role of the national consumer groups is to ensure that the messages, the understandings, are made public and shared and that they provide another source of reinforcement if people are unsure about where they stand in a certain situation or where they could get support. The national consumer health services often provide helplines, through either the internet or the phone, that can link you to services that can provide the absolutely necessary support that you have to have.

Certainly, my own experience from working in the mental health space and with mental health consumers is that their activities and their knowledge are so valuable in the development of policies in this space and have consistently ensured the concept of wellness. This is that individuals will have the space to have their wellness as the No. 1 focus of the process, rather than medical definition and diagnosis. I think that is one of the most important elements in mental health change in the last 10 years. I will be forever grateful to the patients and for the resilience of the people in the national consumer groups that, despite the many times when they must have despaired about whether their voices would be heard, they continue to be actively engaged in the process.

Senator Griff, your motion remains more real than ever. I think at this stage people across the chamber would understand that the absolute importance of transparency and accountability in our health system must be paramount in the development of any policy and, in particular, when we're looking at the policies around our health and our wellbeing.

In that process, I think it's important that no matter what we do in the development of policy-and no matter what we do in the discussion about how we should have changes or where focus should be on resourcing-we should always put at the very centre of any discussion the role of people who have had the lived experience of illness, of hospital services and of the very personal ways that the whole range of things take place once you take that step onto the medical journey. All of those should be able to be identified and the consequent impact of them should be part of the development of policy. Otherwise, we're going to be consistently just putting things on top of discussion rather than engaging fully. I think that's something that we can benefit from in the development of our health policy.

It is important that this is part of an open discussion. It's sometimes seen as an afterthought and something that can be done after the really important stuff of putting the research dollars-or putting the emergency dollars-into equipment or resources in hospitals. All of those are important, but those things will not be as effective as they could be if we don't maintain that absolute focus on consumers in the situation.